Thursday, July 17, 2014

International Fragile X Conference, Day 3 (that would be Thursday)

The mornings of each day of the conference always start with a keynote speaker, and Thursday's was the wonderful Doctors Berry-Kravis and Hagerman.  This morning they spoke on the benefits to and the need for folks to participate in research trials.  After the past year, I think there may be a lot of gunshy people, when it comes to offering ourselves and our children up as test guinea pigs.  We were lured with exciting stories about the wonders of these drugs, and then the trials ended in what can only be deemed as failure - the companies ran out of money and the data collected didn't show great results anyway.

We knew, though, there were no guarantees and we knew that just 1 of 10 drugs in trials ends up being FDA approved and finds its way to the pharmacy shelves.

Much was learned, though, in these drug trials, and changes are being implemented in order to make the next trials end with better results.  We all still have the same end goal in mind - a medication that targets the Fragile X gene and corrects the deficits the faulty gene causes.

I realized one goal of this week, in meeting Leeann Taylor, author of The Fragile Face of God, a book about the author's experiences raising her children with Fragile X.  I could not put her book down.  She tells a compelling, thoughtful, and thoroughly relatable story.  If you haven't read it, you should.

I attended a sensory processing session, in which they gave another example of a way to help an audience experience what sensory processing disorder might feel like.  They had two volunteers take off their shoes and socks, and then one of the presenters gave them specific instructions on the order in which to put them back on, while the other created distractions with bubble wrap and candy wrappers, making it very difficult to hear what the instructor said.

Mark finally arrived in town today, so we decided to find an In and Out Burger for lunch.  We had to drive a distance from the hotel, but we finally found one.  It was clearly a very popular place!  So if I had a bucket list, and if having an In and Out Burger was on it, I could cross that off.

I attended a few other sessions this afternoon, including one about a new Fragile X life planning tool developed by Mouse & Tracy called FX Max, a session reviewing a study that was done to determine which iPad apps were best for encouraging interaction between parents and kids on the iPad, and another about the kinds of things teachers need to know about Fragile X when they are writing IEPs.

In the evening we decided to check out Downtown Disney, a place where one can shop and eat and do and see Disney things, without having to pay entrance into the amusement park.  It was probably just as crowded as the parks and the commercialization is staggering, but I couldn't help getting a little excited about all the Mickey Mouse stuff and wanted to buy it all.  For the kids.  Not myself.  Just them.




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